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PSA CONCERN

RADIATION HOPEFUL

Posts: 218
Joined: Dec 2010

Jun 20, 2012 - 8:53 pm

TODAY I had an appointment with my urologist. My PSA is now down to 0.28, it was 0.30 last month.I asked if there was a chance of cure---the PA immediately said NO--that my PSA should be down to zero by now---after 1 full of year of hormone shots (FIRMAGON) & the radiation protocol I chose. This has been bothering me all day, IS HE (the PA) correct in his answer??

It looks like maybe a talk with the urologist is needed. My doctor always takes time to answer questions completely. I do have contact with the PA but she is real good with communication and also takes time to answer questions. IF this does not work, then maybe another doctor's input will help. I think that the way the PA answered needs to be looked at. The PA's training is complex, but the doctor is the real expert. After 16 months my PSA level is at a 0.03, the doctor explained the it would be nice to see all Zero's, but this does not always happen. Now all I have had has been the surgery. I hope this helps this is just my humble opinion. Fighting cancer sucks, but the PA and doctor owes it to you to answer questions in a professional manner. Donot let this bother you, there are good people here with some very deep insight

Forgive me if I have misremembered but I seem to recall that you were initially diagnosed with a Gleason 9 with no evidence of metastasis and your medical team launched you on a course of hormone therapy coupled with IMRT. Wasn't your original PSA reading in the 50s? Now, about 18 months later, your PSA is down to 0.28 and still dropping. I am assuming you are still receiving the Firmagon shots.

Setting aside the apparent bluntness of this particular PA it seems to me the gist of your question is whether or not a "cure" is in the offing. There have been many discussions in this forum on whether or not there is truly a cure for prostate cancer or any cancer that is inherently metastatic for that matter. It seems that a "cure" is in the eye of the beholder.

From what I have read in many cases that an early stage prostate cancer completely contained within the prostate gland and treated with either surgery or radiation that there is an excellent chance that the cancer will not manifest itself again. Historically, both surgery and radiation show about a 30-35% chance of biochemical recurrence characterized by rising PSA scores some time after treatment. While some of the more modern forms of radiation (such as what you received) seem to have a much lower recurrence rate in the near term, we won't know for several years whether this trend will continue at the 10 and 15 year points.

Prostate cancers diagnosed in the intermediate and advanced stages have higher rates of recurrence. A Gleason 9, as you well know, is a dangerous cancer. Although there may not be any immediate evidence of metastasis there is a high likelihood that a Gleason 9 patient will see tumors that have spread outside the prostate via the blood or lymph systems even though they might be microscopic and otherwise undetectable. Your treatment course, which i personally think was very wise on your part, went after the cancer in an aggressive way. The radiation attacked the prostate cancer cells within the target area of the IMRT and the Firmagon works to curb cell growth in those areas that were not radiated.

The fact that your PSA continues to drop is a good sign in my lay opinion. It suggests to me that your treatment is working as intended. What i suspect that the PA was trying to say is that the Firmagon (or any hormone therapy drug) should knock the PSA levels down to near zero levels regardless of whether or not any other treatment has occurred. I'm certainly no expert on hormone therapy and I don't know what the normal range of expected PSA scores should be given your Gleason 9 starting point. I would request an email exchange or arrange for a telephone chat with your lead physician and ask him what his opinion of a PSA = 0.28 after being on Firmagon for a year really means for a Gleason 9 patient and whether this is within a normal range or not.

You really won't get a feel for the effectiveness of the radiation treatment until you have stopped hormone therapy and your testosterone leeks return to normal. This could take several months after you stop taking shots.

Men who retain their prostates will never see a zero PSA score. (Although HT skews this data) Their PSA will decline until a nadir, or low point, is reached, and then stays at that level. If PSA results raise more than 2.0 ng/ml above the nadir it is usually considered a recurrence.

One phenomena associated with radiation treatment is the PSA bounce effect where the PSA declines after treatment then inexplicably increases and then continues a decline toward nadir. Perhaps your reading was somewhere during the bounce phase? I would also query your doctor about his thoughts on PSA bounce.

In any event your PSA continues to decline and that is a very good thing from my perspective. Whether or not there is a "cure" seems off point to me. What I think you should be asking is: Is this cancer going to progress to a terminal late stage that kills you? I think its way, way to early to draw that conclusion on that and the PA should have made that clear to you. I wish your PA had taken the time to put all of these numbers and nuances in perspective for you and I hope you seek further clarification with the doctor in person.

Firstly let me congratulate the fact of another decrease in PSA. It seems that the downward trend continues; now probably approaching a plateau. This time the decrease is 7% from the previous test. Your “zero” is not there yet but your PA is totally erroneous if he equals success to a zero number (0.00000000) in a patient with similar stats.

Kongo passed you the correct opinion with regards to cure and recurrence. PSA is not a marker to judge cure but treatment success. This success is seen in regards to cancer control, recovery to normal living standards and health. One never returns to the same conditions it was before the treatment.

You may know by now that levels of PSA are influenced by many factors (infections included) not just by the treatment protocol. The responses to the medication also influence outcomes. Your doctor may have a threshold which he uses as reference to define your case. I would recommend you to inquire with him in your next visit.

As far as we laymen can judge your case, you have not recurred. One must wait for the nadir and check for any progress through periodical testing (one every 3 to 4-months) to draw a conclusion. The side effects of Firmagon may be affecting the way you judge what is told to you. Relax and do not become anxious. Try to enjoy life. How about another trip to the God's Country (Potter County) at northern Pennsylvania, or a visit to my Portugal?

Here is a link you may find interesting in reading;

“According to the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology for Prostate Cancer (4), additional treatment may be indicated based on the following PSA test results:
o For men who have been in the watchful waiting phase—their PSA level has doubled in fewer than 3 years or they have a PSA velocity (change in PSA level over time) of greater than 0.75 ng/mL per year, or they have a prostate biopsy showing evidence of worsening cancer (4).
o For men who have had a radical prostatectomy (removal of the prostate gland)—their PSA level does not fall below the limits of detection after surgery or they have a detectable PSA level (> 0.3 ng/mL) that increases on two or more subsequent measurements after having no detectable PSA (4).
o For men who have had other initial therapy, such as radiation therapy with or without hormonal therapy—their PSA level has risen by 2 ng/mL or more after having no detectable PSA or a very low PSA level (4)".

Just found out my latest pSA result is now 0.31---it was 0.35 in JULY-- will see doctor on Monday the 27th for appointment. Don't know if he will give me another shot of Firmagon or what. Although this is lower than the lst test ,it's still not as low as the 0.28 I had in June of this year.
Appreciate any input regarding the latest result.

Your post is “intriguing”. I wonder if hypogonadism is “taking a toll” in your reasoning.
It is difficult to help you with a reasonable answer for the lack of information.
I would like to know about the follow up of your last post where you commented of getting a testosterone test to check for Firmagon effectiveness. What are the results?
What is your doctor-in-charge comment with regards to the level of PSA?
The PA (urologist) is passing you his views on your case, but does he have any threshold PSA that he follows or uses as a reference in similar cases as that of yours?

Here is the link of your last post;
http://csn.cancer.org/node/243447#comment-1256916

A decrease is good but you should consider any progress with larger intervals of tests.

Given that individual PSA readings are subject to a lot of variation (time of day, lab equipment calibration, overall body chemistry, statistical distribution, etc.) I think an individual measurement at the second decimal level is much less important than the prevailing trend. In your case that's a downward trend. That's a good thing.

V GAMA & LONGO
THaNKS For thr replies I truly appreciate them.
Got latest blood results in mail today>> Testosterone is less than 20----range on paper shows 120 to 767 ng/dl and my PSA shows 0.31 with a range of less than 4.00 ng/ml
I wiil post what the doctor (urologist) tells me on Monday the 27th.
This is the first testosterone check I had & that is because I asked to have it taken----is this "OK" to be so low? No wonder I"m tired & I thought it was the Firmagon

Testosterone at 20 ng/dl is within the range of castration (lower than 30). This indicates that Firmagon is effective in keeping your “balls” quiet. They are not producing testosterone so that you are in chemo castration.
This is a status of hypogonadism (low testosterone levels) that may cause risks and symptoms which you can identify through other tests and own feelings. You should care for bone loss (osteoporosis) heart health (arrest) and liver function (lipids).

I do not recall your age and urologists do not demand bone density scans for young people, but the continuous castration status causes osteopenia leading to osteoporosis. You should get a DEXA test now ($50) even if your uro does not send you for one.
Here is the link to a previous post about the matter:
http://csn.cancer.org/node/210934#comment-1087051

Regarding tiredness, this is probably the number one symptom reported by all survivors. In my case it was the one that most affected me. I am now on “vacations” from the treatment and feel my strengths back. I feel much better but the levels of testosterone circulating in my body are still lower but increasing.
I wonder what have been your experience regarding symptoms from the treatment.

The symptoms I got from Firmagon shots are some tiredness, injection site pain in the stomach & an occassional hot flash, other than that I felt good.
I ALSO Had a blood test & everything is in the normal range except the testosterone & RBC automated which was 4.11 the range is 4.6 to 6.20
I will see the doctor (urologist) this morning then post what I'm told-- Saw the actual doctor -- he told me the PSA will have fluctuations at this low level,that it's nothing to be concerned about. ONLY if the PSA keeps rising will it be a concern. He ordered a DEXASCAN for tomorrow ---if the results aren't favorable, he said he will put me on PROLIA. I Got another shot of FIRMAGON in the stomach but no prescription for a PSA test, the PA told me it wasn't necessary to have a test every month. The nurse giving the shot had difficulty emptying the Firmagon needle ---she said she hopes it's "OK". The fluid wouldn't come out of the needle until she pulled the long needle out of the stomach a little. It sure is causing a bulge in the stomach, don't know what she could have been against? Hope the bone density scan comes back with good results, I don't want PROLIA---been taking calcium every day for months & was told I shouldn't take any calcium pills prior to the test. I questioned the low testosterne level & was told nothing will be given to me to raise it, that woul be like pouring gas on a fire.
The doctor performed a DRE & said everything seemed good ---the prostrate was smooth & he only felt small ridges from the radiation---NO LUMPS. HAVE A GREAT DAY

I quit because of the nurse. Ended up with swelling that they thought, after 10 days, was either abcessed, or infected. Stayed that way for six weeks. Quit shots. Doctor came over and gave me a shot. It was ok. Now nurse is using that as a guide. Tough enough for the shot, but when nurse does not give a darn, you are on your own, complain, or quit like I did. Worked for me.

Those are wonderful news. You may be thrilled and very happy for the doctor’s comments.
I am also happy to know about the DRE results and that you finally will start having PSA tests at longer intervals.

I hope the DEXA scan is negative for osteoporosis but if it is found that you got osteopenia you may start a preventive approach taking on/off bisphosphonate pills (such as Fosamax). If you got advanced osteoporosis (bone loss) then you should consider taking a bisphosphonate continuously or take a denosumab drug (human monoclonal antibody). Prolia and Xgeva are famous denosumab drugs for treating bone loss due to cancer or in patients at high risk for bone fracture.
You may dislike the Prolia recommended by your doctor for what you know about its side effects but not all patients experience the same occurrences or intensity. You may inquire with your doctor about the possibility of changing it with Xgeva.
In any case, both drugs require a series of “standards” before taking them which you must follow strictly. Both “deliver” similar side effects, being hypocalcemia (low levels of calcium in the blood) the one most reported.

Regarding low count of RBC, you may check if your body got enough vitamin B12. This is required for the “production” of RBC. Inquire with your doctor particularly to check for Anemia.
I also recommend you to get tested for vitamin D. This is important in the osteoblast effect (build up of bone). http://www.medterms.com/script/main/art.asp?articlekey=24502

You do not need to worry about low levels of Testosterone for the moment. You can expect it to increase once you stop the Firmagon.

I"M somewhat upset right now but I wanted to share the results of my dexca scan with you (just got copy in the mail)---
Image of lumber spine is unremarkable--it is in the osteopenic range with a T-score of -2.4 (FRACTURE RISK IS MODERATE)

LEFT HIP T_score of -2.9 FRACTURE RISK IS HIGH
RIGHT HIP T-score of -2.9 FRACTURE RISK IS HIGH
DISTal LEFT FOREarm T score of -4.0 FRACTURE RISK IS HIGH

I am sorry for the diagnosis of osteoporosis. I wonder if you have done a density scan before so that you can compare the results. In any case the T -2.9 is conclusive of weaker bone and the hormonal therapy may affect still more any progression of the loss.

You need to take something. You can inquire with your doctor if he would recommend you just a bisphosphonate instead of Prolia. However, not to alarm you but you should get a dental check up and dental repairs done the soonest because bisphosphonates and denosumab drugs (Prolia, Xgeva, etc) in time can cause osteonecrosis of the jaw.
You can read about it here;
http://dentistry.about.com/od/toothmouthconditions/a/Osteonecrosis.htm
http://www.algaecal.com/Blog/denosumab-aka-prolia-xgeva-even-worse-than-the-bisphosphonates/11454

As you commented “……in the mean time I must be careful not to break any bones”.

1/ I had the radiation treatments & I'm taking the hormone drug Firmagon for almost two years
2/ I DO NOT eat any red meat --only chicken, turkey. pasta & fish.
3/ I walk alot & exercise by cutting wood & placing it on skids

my boyfriend had his prostate removed and they recommened the 6 month lupron shot. he has a 9 gleason score. His psa level has been at 0 post surgery and help with the lupron shot, however, today he received the results from his post 6 month lupron shot and found out that his psa has rose to .10. Very emotional about the results because we dont know whats going to happen from this point. The side effects of the lupron shot are so intense that I worry if he will choose that route again. What happens now? Is it normal for the psa to rise post lupron injection? I know that we will need to discuss this with the doctor, but the doctor never called us with the results, we called them. any suggestions out there?

You need to get another doctor. They should call you in for consultation. .1 is not bad. Lots of guys would love that reading. I would start looking for another DR. And understand that different labs get differwnt results. Do not be alarmed or excited until you get two tests.

You need to share more info (PSA history, biopsy path report, pathological stage, age, any other health problem or drugs taken, the protocol recommended by his doctor, etc.) to get better answers from the survivors here.

The “zero” PSA post surgery seems to be fictitious. What was the real value?
Some doctors got a fixed threshold to indicate success of the treatment and a PSA of 1.00 ng/ml could be their Zero. In such a case, a PSA = 0.10 ng/ml is lower than the Zero commented initially.
Discuss the matter with his doctor and get a copy of all information (tests, reports, etc.) to keep a file on his case. Remember that if recurrence becomes apparent your friend will probably start consultations in another hospital/doctor and the previous data is very important.

A PSA at 6 month after having a Lupron shot should be lower than the previous tests. However, in some guys the LHRH agonist (Lupron) is not Sufficient to control spread of cancer. Added drugs such as antiandrogens, etc, may be required.

Second opinions in prostate cancer diagnosis and treatment are always required. Oncologists are better than the "traditional" urlogists in hormonal therapies where combination of drugs is routine.

Thank you so much for your response. After sending the last message about his psa being elevated, we found that his psa had not changed any from a 0 psa to a .10 post lupron shot.

Is having a psa of .10 mean that the cancer is undetectible or is the lupron shot just a "bandaid" for the actual results in future testing? His gleason score is a 9 and with that score we are concerned about the aggression of the cancer. Do you think that we should feel hopeful that the cancer was removed during radical prostetecomy even though the pathology report says that the margins were very close and the cancer might have spread past the capsule? The other question is now that the lupron shot is at its 6 month duration, when do we think about radiation or another form of treatment before the psa rises back to a 4 like it was prior to prostatectomy?

Bunch of questions I know.. but seems like we get more informative information from this discussion board than what we do paying hundreds of dollars for an "i dont know" from his urologist.

Sorry you and your BF are having to deal with these PCa issues. Mike and Vasco have given you some good suggestions. As Vasco has already commented, it's difficult to provide lay opinions without more info re your BF's PCa history. BF will need to obtain a complete copy of his PCa medical records, including obtaining copies of all health records, doctor's mtg notes, test results and pathology reports soonest. You will need this info to give to the PCa oncologist when you see him/her for a 2nd opinion. IMHO, there is no need for a urologist to be managing BF's care/case--the uro's job was done after RP follow up. To quote the excellent advice from Tarhoosier given to another poster recently "He must take himself to the best medical oncologist he can find and afford."
http://csn.cancer.org/node/247098#comment-1283430

Re your question "Do you think that we should feel hopeful..." I am the wife of a man dx'd with stage T3 high risk PCa, and the reality is that no one can tell you how you should feel (although some people will try).

Here's what I know and try to remember: in the sage words of Paramahansa Yogananda "You cannot buy peace [or hope], you must know how to manufacture it within."

I remain hopeful one day at a time that my husband's aggressive PCa txs were successful and curative and that his PCa continues to be in remission (even though I'm very aware of the insidious nature of PCa). And even though my elderly mother is now in Hospice (not for cancer), I remain hopeful for her too--hopeful that her passing will be calm and peaceful, without suffering.

“Undetectable PSA” is an expression used by doctors to signal that the cancer is in remission or sort of dormant, indolent. Doctors cannot assure that a treatment will lead to cure but that such treatment may provide it. A successful cure can be found if one doesn’t experience recurrence along his journey in life, after ending the therapy.

In any case, your friend’s last result is low but not in the levels considered by experts as a level of “Remission”. Remission by some doctors is termed to PSA levels lower than 0.06 ng/ml or still lower than 0.03 with some more restrictive doctors (in RP cases).
Your friend’s test results of 0.10 could in fact be a 0.06, if the assay used by the lab where the test was performed just reads lower limits of 0.10. You can find out about the above by inquiring at the laboratory or your doctor. (What is the Lower Limit of Detection (LLD) of the assays?)

Ultra sensitive PSA tests/assays with two decimal places (0.XX ng/ml) that got a lower limit of detection of 0.01 or 0.02 should be used as follow up tests in patients that did radical prostatectomies. Without a prostate gland in place any existing serum PSA derives from a small piece of prostatic tissue left behind (inner layer of urethra, etc). Such piece could be cancerous or benign, but a small portion of benign cells are known to produce tiny fractions of serum PSA of about 0.005.

What the above means is that the prostatic cells producing PSA of a level of 0.10 may be dormant due to its nature or because of the effect of the Lupron shot.

Gleason 9 patients are at high risk for recurrence (rates of statistics) but everybody have a successful outcome if the doctor manages to remove the whole cancer. The pathologist report after surgery can provide a better understanding of what was found and the real status of your friend.
You commented above that “the cancer was close to the margins” but do not indicate if there were existing extra-capsular extensions or apparent metastases. It is common in open surgeries to remove the seminal vesicules and a few lymph nodes that would also have been examined by the pathologist.
You should get a copy of the path report from your doctor and verify if spread is written. You could also check for the results of image studies (MRI, CT, Bone scan, etc) done before surgery. These may have been negative to metastases but levels of PSA inferior to ten (10.0ng/ml) may not be detected by traditional equipments of lower resolution. False negatives are common in cases of low levels of serum PSA or in cases of micrometastases.

The Lupron shot could be part of the treatment protocol used in a combi of surgery plus hormonal. This is a method preferred by some urologists in high risk patients, but such does not mean that they use it because of apparent metastases. It could be as a preventive measure or fixed protocol.
If the PSA increases continuously, such may be due to recurrence and doctors may do radiation or use other more efficient HT drugs.

In any case, it is too early to start thinking in recurrence or salvage treatments. Take the time and enjoy the low level PSA. Be confident and hopeful for a complete recovery from surgery and return to normal living.
Prepare a file as recommended above and do things coordinately and timely.

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